Tag Archives: Disability

I’ve been thinking a lot about disability in the wake of the recent school shooting in Connecticut. I am sad that so many people’s reaction is to blame mental illness or autism. It especially bothers me when people call for “more services for mental health.” The implicit assumption that mental health problems make people violent, and that mental health services are mainly there to help protect non-disabled people from those of us with mental illness, actually hurts people with mental illness. These calls for services sound so benevolent that it’s hard to call people out on it. But one of the main barriers to accessing services is stigma. Another barrier to services is the fact that many programs were created in the wake of violent tragedies like this one, which means that they’re (1) coercive, and (2) only available to people who are seen as likely to become violent.

After I posted these thoughts on Facebook, someone asked me which organizations I’d recommend to people who are interested in donating to a mental health/autism advocacy organization that focuses on actually helping people with disabilities AND helps oppose stigma and discrimination. Here’s a short list of organizations I’ve actually worked with and would wholeheartedly endorse:

Autistic Self Advocacy Network. Run by and for Autistic people, this organization has proven amazingly effective at advocating for policies that improve services AND decrease segregation and discrimination against adults and children on the autism spectrum, including people with a wide range of support needs.

Bazelon Center for Mental Health Law. This organization focuses on the rights people with psychiatric disabilities and has been doing great work advocating for children with serious behavioral needs. They help fight discrimination and advocate for supports and services to help people remain in the community.

Trauma and Learning Policy Initiative. This project of Massachusetts Advocates for Children focuses on helping children who have experienced trauma (such as the children who were affected by the school shooting). They focus on improving teachers’ understanding of the emotional effects of trauma and helping schools become “trauma-sensitive environments.” This helps traumatized children stay in mainstream school environments where they have a better chance of academic success and long-term recovery. Although they’re a project of Massachusetts Advocates for Children, they do nationwide public education and advocacy to help children across the country succeed in school. This is a really small project and it gets limited publicity, but it does a lot of good.

I intend to post something more personal about this issue today or tomorrow. But it’s hard to write, and I figured in the meantime it would be good to offer people some options for advocacy/donations if they were interested.

Time Magazine has a great article on the psychology of cover-ups in the context of the recent events at Penn State (trigger warning for discussions of sexual abuse). Here is a choice snippet:

When the actions of a group are public and visible, insiders who behave in an unacceptable way — doing things that “contravene the norms of the group,” Levine says — may actually be punished by the group more harshly than an outsider would be for the same behavior. “It’s seen as a threat to the reputation of the group,” says Levine.

In contrast, when the workings of a group are secretive and hidden — like those of a major college football team, for instance, or a political party or the Catholic priesthood — the tendency is toward protecting the group’s reputation by covering up. Levine suggests that greater transparency in organizations promotes better behavior in these situations.

The article also makes some other important observations: that people are more intervene if they think that their intervention will be supported by the community around them and not met with hostility for “butting in” to issues that aren’t their business, and that people are less likely to intervene when the bad actor is a respected authority figure and the victim is a member of a marginalized group (for example, a “troubled teen”).

All of these observations are incredibly important not only to the recent Penn State case but also to the law of institutions in general. There’s an institutional bias in our society that is particularly evident in our disability services systems (see, e.g., Bruce Darling’s testimony for ADAPT (accessible PDF)), criminal justice systems, and child services systems. Although abuse and other human rights violations in these institutions are rampant (see any of the links above), many defenders of institutional services delivery will explain abuse as the work of a few “bad apples” and not a problem with the institutions themselves. These explanations have a lot of intuitive appeal to those who have never actually experienced institutionalization or tried to be a whistleblower themselves. People would like to think that they’d report abuse all the way up the institutional hierarchy and also to the police and the media, and that anyone who fails to do so must simply be a bad person who is not like them in any way.

However, as this post by Amanda Forest Vivian illustrates, it’s incredibly difficult even for highly moral individuals to report abuse in many institutional and “community” programs. Like football staff at Penn State, staff at institutional program (and at many “community” programs) tend to form cohesive groups and are invested in protecting their reputation. Because these programs operate more or less out of sight from the rest of the community, they tend to respond to misbehavior by covering it up rather than publicly punishing their own members, as Levine noted in the Time article. Moreover, lower-level staff members often justifiably fear that whistleblowing will not actually end the abuse but instead may lead to retaliation by other staff members and supervisors (especially when the perpetrator is higher-ranking). Like McQueary at Penn State, even when a low-ranking staff member is disturbed enough to report abuse to a supervisor, they frequently do not feel empowered to follow up and report to outside authorities if the supervisor fails to take action; to do so would likely be perceived as insubordination.

This is why social sciences research on the environmental influences on social policing is so important. Unless community members and policy members understand that certain environmental factors are perpetuating and enabling institutional abuse, they won’t be able to commit to eliminating those factors from our service delivery systems.

DisAbility Rights Galaxy has a great post on a rather scary case pending before the Connecticut Supreme Court addressing whether court-appointed conservators for people with disabilities should be immune from lawsuits. Conservators wield incredible power over their wards and it’s not terribly rare to hear of conservators who financially exploit, abuse, or neglect their wards. In this case, for example, the conservator failed to object to a ward’s institutionalization; I won’t speculate on his motives, but this has in the past happened when conservators felt that institutionalization of their wards would make their job easier.

I haven’t had time to read the pleadings, but I’m a little confused why court-appointed conservators should be entitled to such immunity. It seems that the defendant in this case is comparing himself to a judge, as judges are immune from lawsuits concerning the validity of their decisions (for example, if you are incarcerated based on a judge’s ruling that turns out to have been contrary to the law, you can’t sue the judge for false imprisonment). Judicial immunity makes some sense in that there’s already an avenue – appeal – for contesting bad decisions. Plus, judges are obligated to do justice to both parties before them and are constantly forced to make decisions that are bad for at least one of the parties before them; permitting lawsuits against judges might scare judges out of ruling against wealthy and litigious parties who might later sue them.

Conservators, on the other hand, don’t face any of these challenges. They’re obligated only to their ward, and are under absolutely no requirement to be “impartial.” Their decisions are not directly subject to appeal. They have no obligation to hold a hearing or observe any sort of process prior to issuing a decision. Their role is probably closer to that of an attorney, or to someone holding a durable power-of-attorney. Both attorneys and power-of-attorneys can be held liable for malpractice.

Although I think of myself as having a single, neurologically-based disability with a variety of manifestations, I’ve collected a variety of different diagnoses.

The first one I remember receiving was “Tic Disorder NOS” in high school, after my parents finally brought me to a neurologist for my neck tics (which were the inspiration for my current pseudonym and were severe enough that I now have degenerative disc disorder in my neck, although they’re currently well-managed with medication).

I came back to the same neurologist in college, complaining that I was still having issues with compulsive skin-picking and hair-pulling and that I would occasionally get “stuck” in certain activities for hours even when I had other things to do. That earned me a diagnosis of OCD.

Parents and educators had been trying to get me evaluated for ADHD since at least middle school, and I rather clearly had it, but I refused to submit to an evaluation or take medication until law school, when many of my academic self-accommodation strategies (such as participating extensively in class to keep my mind from wandering) stopped being available. Finally, in Spring 2008, I finally caved and went to a neuropsychologist to be evaluated for ADHD. I also suspected Asperger’s by that point, and told them to the evaluator, including a pretty comprehensive description of what I was like as a child. She agreed, and diagnosed me with both ADHD and Asperger’s.

When I mention pretty much any of my diagnoses other than Asperger’s, people mostly just nod and accept it. Of course it’s possible to be a successful human being and also have ADHD, OCD, or tics. But whenever I mention the Asperger’s diagnosis, the response is frequently something along the lines of “really?”, “I find that hard to believe,” or “maybe, but it’s very mild.” After all I have excelled academically and have a job at which I’m competent, and not even as a scientist or programmer or one of those other jobs that people on the autism spectrum are supposed to be especially good at. How can you even BE a lawyer and have Asperger’s?

This sort of response is exactly why I haven’t explicitly disclosed this diagnosis to more than two people whom I know professionally. I want people to perceive me as a competent employee or co-worker, so I can’t exactly respond to their skepticism by listing all of the things I can’t do or have significant trouble doing. I’ve spent years learning essential career skills, often to the exclusion of general life skills, and consider myself highly competent at activities relevant to my work performance. But if I start listing all of the non-work things that I have trouble doing, there’s always the risk that someone will have a hard time believing that I can’t do those things but can still work.

Discussions about social skills are particularly problematic. The main symptom that people associate with Asperger’s Syndrome is serious social deficit – the stereotype is of a person who absolutely can’t understand the feelings of others and is constantly committing social faux pas and ranting about boring topics. However, I actually think that, when you define “social skills” appropriately, I now have at least average social skills and higher-than-average social self-awareness. Although I had serious social problems in childhood, my usual response to those problems was to spend tons of energy trying to figure out what I was doing wrong and fix it. I read books on human behavior, studied psychology, and pestered my friends for detailed analyses of their feelings.

When people describe me as “high-functioning” and doubt my Asperger’s diagnosis, they’re usually thinking mainly of my ability to carry on a natural-seeming conversation for a short period of time, including making eye contact and reading facial expressions. It pleases me that they think I’m good at this, since I worked hard at that skill, and I have absolutely no interest in convincing them that I am actually less socially skilled than they think I am. At the same time, there’s usually a reason that I told them that I had Asperger’s, so simply letting them believe that I don’t – or that its effects on me are negligible – is not an acceptable option.

So far, I’ve settled into the habit of saying something along the lines of “thank you, I worked hard on that skill, and actually Asperger’s involves a range of sensory and attentional differences aside from social conversations. In fact, I was mainly mentioning my Asperger’s diagnosis to explain xyz,” where xyz is usually a past experience, a sensory or attentional issue that I’d like to be acknowledged or accommodated, or a very specific “social” issue such as my extreme difficulty remembering people’s names or faces (incidentally, I do recognize faces well enough to tell that I have met someone before, but I have difficulty remembering their name or where I’ve met them and frequently have to “reconstruct” this information from contextual cues. I would rather people know that this is a neurological issue than think I don’t care about them enough to remember them).

I have to say, even this hasn’t entirely worked. I am even in a bit of a war with my cognitive-behavioral therapist (whom I see to treat my social anxiety and compulsive skin-picking) on whether my Asperger’s diagnosis is even relevant to my treatment. And I’m constantly worrying that my one co-worker who knows I have Asperger’s is now underestimating my social skills and judgment. I desperately wish that I could tell some friendly colleagues about my diagnosis so that they can give me advice about networking, which is a significant lacuna in my social skills repertoire and has the potential to dramatically interfere with my career (I am currently looking for a new job), but it seems like a dangerous move.

The world needs more professionals who are open about being on the autism spectrum. I know I am not the only Aspie in the legal profession – I am pretty sure I wasn’t even the only one in my law school graduating class (not by far). As far as I can tell, this is the only way to make the profession (and other similar professions) a bit more friendly to people on the spectrum, and I can’t exactly count on others to do what I’m too scared to do myself. Someone has to blaze a trail. But being an autistic trailblazer, especially early in my career before I’m well-established, is daunting. Even if I’m socially “high-functioning,” disclosing a disability – especially one as stigmatized as autism spectrum disorder – is a minefield even for people who are highly socially competent. I hope that talking about it here will help me sort through how to act, what to say, and what to expect.

The current debate over health care reform has sparked another round of debate over whether, and how, disability should be taken into account when making health care decisions.

Since it would be unreasonable to expect the government to pay for every medical intervention that could conceivably improve a patient’s health, most serious proposals involve some metric for determining when an intervention is sufficiently ‘worth it’ to justify the expenditure (an aside: I find it rather irksome that this gets referred to as “rationing.” Unlike true cases of rationing, no serious proposals involve giving the government exclusive control over the supply of medical care. Moreover, people already don’t always have access to the medical care they would like to have; if federal health “rationing” is undesirable, then, it can’t simply be because the government makes decisions on which treatments to pay for, but rather whether people will in fact have fewer options after the federal health plan is passed).

There’s no end of debate, though, over what criteria the government should use in deciding which treatments to fund. We may agree that lifesaving treatments are more important than more minor interventions, but even then there seems to be a hierarchy among the types of lifesaving treatment: an intervention that extends someone’s life for three weeks is not as “worth it” as one that extends another person’s life for eight years. Extending a person’s life for eight years may, in turn, be less “worth it” if that person is unconscious for almost all of that time.

This time around, Singer at least acknowledges that determining the extent to which a disability decreases one’s quality of life is pretty difficult, especially considering that able-bodied people consistently overestimate how unhappy they would be if they became chronically disabled. So this time, he’s got a brilliant solution guaranteed to endear him to the disability rights crowd: just ask disabled people how many years of their life they’d give in order to be nondisabled! He even acknowledges that maybe – just maybe – people with quadriplegia wouldn’t want to give up a single year of their life in order to become non-quadriplegic, in which case quadriplegia should not be taken into account for QALY calculation purposes. But then again, he warns, in that case, nobody would fund any medical interventions to prevent or cure such disabilities, because clearly they don’t have much of an effect on patients’ quality of life. Quite the dilemma. But a false one.

First off, Stephen Drake of Not Dead Yet has already pointed out that, in fact, people with disabilities aren’t as interested in funding for ‘cures’ for disability as Singer seems to assume they are in this article. That point alone, though, doesn’t fully expose the flaw in Singer’s reasoning. If we were to buy Singer’s implicit assumption – that we should spend money on prevention or cure of a physical condition if, and to the extent that, people with that condition would be willing to give up some amount of their future life in order to be free of it – then saying “yeah, people are overly obsessed with prevention and cure of disability” would imply that people with disabilities would be willing to give up a little of their future lives to cure their disability, just not as much as most nondisabled people would expect. Clearly that’s not what Drake would want us to conclude (in fact, he points out right afterward that the whole framework is problematic).

So what is wrong with this argument, other than its apparent overestimation of how much it actually sucks to have a disability?

First, let’s note that only a philosopher (that is, someone unaccustomed to actually implementing social plans) could have come up with as impractical a proposal as “let’s just ask the disabled people how much worse their lives are.” Suppose such a plan is in fact adopted. The first thing the Department of Health and Human Services would have to do, then, in order to make a useful QALY guide is solicit information from people with disabilities on how much worse off they are. My guess is that even if a significant number of people with quadriplegia would be willing to give a year or so of future life in order to be able to walk, not many of them are going to think to themselves “hey, let me volunteer that information to HHS so that they can take that into account when deciding whether it’s worth it to pay for my health care.”

Singer could counter that this perverse incentive will be offset by the fact that, if people say that the quality of their lives isn’t changed at all by their quadriplegia, then HHS won’t spend money for prevention or cure of it either. This, of course, ignores the fact that, like many disabilities, quadriplegia itself lowers life expectancy, so an intervention that prevented a healthy person from becoming quadriplegic would still be potentially worth it under a QALY analysis.

Even if it didn’t, though, it would not be the only physical condition that people might consider as having some bearing on quality of life despite the fact that people with the condition don’t think their lives are worth less to them as a result of it. Suppose Amy contracts breast cancer, and due to late detection, needs a double mastectomy. This makes her unhappy, so she dedicates herself to volunteering and fundraising, not only for early screening programs, but also for better medical research to find safe alternatives tototal mastectomies. This seems like a perfectly rational, and common, response. But it would be nonsensical to infer from Amy’s belief that such screenings are worth the money that she would give up any appreciable portion of her life in order to have her breasts back. In fact, the very fact that she consented to a mastectomy in order to extend her life seems to negate that inference.

In fact, there are plenty of things that we consider important enough to spend significant money and resources on, that we nevertheless wouldn’t take into account when determining whether it’s worth it to extend someone’s life. To use an obvious example, look at poverty: people in poverty clearly have a diminished quality of life, and many people justifiably spend a lot of time campaigning against it. But most people, I imagine, would not give up years of their life in order to not live in poverty (or at least wouldn’t say they would in response to a direct question about it), and clearly Singer doesn’t think that poverty should be taken into account when deciding who gets health care treatment: in fact, the whole point of his health care rationing plan seems to be an attempt to take people’s economic resources out of the health care decisionmaking process. Similarly, we all may agree that having been abused as a child tends to make one’s adult life less pleasant and that preventing child abuse is a good idea, but would we really take that into consideration when deciding whether an abuse survivor gets heart medication?

What is it about disability, then, that makes life so qualitatively less pleasant that it’s worth considering when deciding who gets medical treatment even though other disadvantages aren’t? Perhaps it’s because Singer sees disability as a medical issue, and therefore as the same “type” of problem as the medical conditions for which a patient is seeking treatment. Even then, though, I could think of plenty of physical conditions that would make my life less pleasant but that Singer probably wouldn’t want to consider in determining whether I get lifesaving treatment. Infertility, for example. Or migraines. Or chronic acne. Or an allergy to soybeans. Or a crooked nose. I could even prove that some people would voluntarily shorten their lives in order to not have to deal with them – people may opt, for example, for infertility treatment that involves general anesthesia, which has a small chance of causing death. What is the qualitative difference, in Singer’s mind, between a person with one of these conditions and a person with a disability? It can’t just be a matter of degree, or else these things would be considered in Singer’s hypothetical system, just not to a very great extent.

My guess is that there is none – that Singer’s theory is, in fact, simply internally inconsistent. Sadly, even rather smart people seem overly willing to consider discriminatory policies “rational” so long as the groups that are disadvantaged are the ones we’re trained to expect not too fare too well in the first place.

I am writing to you to express my support for the Independent Living provisions in the proposed economic stimulus package.

These provisions will create thousands of jobs for caregivers. Creating caregiving jobs is particularly important because these jobs are most often taken by women. While I support greater efforts to encourage women to take jobs traditionally occupied by men, it is nevertheless important to acknowledge that the other, more construction-related jobs created by the stimulus package will primarily primarily benefit men, leaving women’s unemployment relatively unaffected. Women, particularly mothers, suffer disproportionately from economic distress and will need jobs too.

Second, Independent Living Centers will improve the standard of living for America’s disabled population. Not only will they help help many people with disabilities reenter the work force, but also they will enable many family members of people with disabilities return to work, as they will no longer be forced to stay at home with loved ones who need full-time care.

Finally, Centers for Independent Living save state budgets hundreds of millions of dollars a year by helping people stay out of institutions and in the community.

Thank you for your attention, and I hope that a satisfactory stimulus bill can be passed as soon as possible.

Speaking of independent living and the AAPD blog, there’s also a good article here on Hillary Clinton’s approach to disability rights as part of US foreign policy. Clinton compares her approach to disability rights as part of foreign policy to her feelings on women’s rights, “not as an afterthought, not as an adjunct, but in recognition of the fact that we know from a myriad of studies and research that the role of women is directly related to democracy and human rights.”

Obama and Biden have warned that there should be no earmarks in the stimulus package, but when the economy is made up of diverse people with diverse economic needs, what will be considered an “earmark”? Some of AAPD’s members’ suggestions, like “fund a massive nationwide disability awareness campaign,” may well be seen as interest-group jockeying for earmarks, but others, like “build accessible housing to put the housing industry back to work,” have more direct economy-stimulating applications. Will politicians take the “no earmarks” message and avoid all programs that are aimed at helping distinct minority groups, thus “stimulating” only those with “mainstream” economic needs and behaviors? How can we effectively stimulate the economy while leaving minority groups, such as people with disabilities behind (especially given the sheer number of people in the US who either have a disability or are caring for someone with a disability)?